The Rosacea Patient Journey: A Novel Approach to Conceptualizing Patient Experiences

The diagnosis of rosacea usually is not a major hurdle for dermatologists, but misdiagnoses can sometimes occur. The Rosacea Research & Development Institute compiled multiple patient anecdotes describing the struggles of finally reaching the correct diagnosis of rosacea; however, no estimates as to the frequency of misdiagnoses was estimated.¹³ Even with an accurate diagnosis of rosacea, correct classification of the 4 types of rosacea (ie, erythematotelangiectatic, papulopustular, phymatous, ocular) is necessary to avoid incorrect treatment recommendations. For example, patients with flushing often cannot tolerate topical medications in contrast to patients with the papulopustular subtype who benefit from them.¹⁴ In the meantime, the patients who are misdiagnosed may be met with frustration, as treatment was either delayed or incorrectly prescribed.

Although there are limited data regarding patient reactions after receiving a diagnosis of rosacea, it can be assumed that patients would be hopeful that diagnosis would lead to correct treatment. In a 2008 article in The New York Times, a rosacea patient was described as feeling relieved to be diagnosed with rosacea because it was an explanation for the development of pimples on the cheeks in her late 40s.¹⁰

Implementation of a Treatment Plan

After recognizing the symptoms and receiving a correct diagnosis, the next step in the patient journey is treatment. Long-term management of incurable conditions such as rosacea is difficult. The main goals of treatment are to relieve symptoms, improve appearance, delay progression to advanced stages, and maintain remission.¹⁵ There are only a few reliable clinical trials regarding therapies for rosacea, so treatment has mostly relied on clinical experience (Table). The efficacy and safety of many older treatments has not been assessed.¹⁵ Mainstays of treatment include both topical agents and oral medications. The use of topical metronidazole, oral tetracycline, and oral isotretinoin have been found to improve both skin lesions and quality of life.¹⁸ Initially, a combination of a topical and an oral medication may be used for at least the first 12 weeks, and improvement is usually gradual, taking many weeks to become evident.¹⁵ Long-term treatment with topical medications often is required for maintenance, which can last another 6 months or more.^19,20

Besides using pharmacologic therapies, some patients also may choose to undergo various procedures. The most common procedure is laser therapy, followed by dermabrasion, chemical peels, hot loop electrocoagulation, and surgical sculpting or plastic surgery.⁶ The use of these adjunct therapies may suggest impatience from the patient for improvement; it also indicates the lengths patients will go to and willingness to pay for improvement of symptoms.

Along with medication, patients are recommended to make changes to their skin care regimen and lifestyle. Rosacea patients typically have sensitive skin that may include symptoms such as dryness, scaling, stinging, burning, and pruritus.¹⁶ Skin care recommendations for rosacea patients include using a gentle cleanser and regularly applying sunscreen.⁵ Issues with physical appearance can be addressed with the use of cosmetic products such as green-tinted makeup to conceal skin lesions.²¹ Remission can be maintained by identifying certain triggers (eg, red wine, spicy foods, extreme temperatures, prolonged sun exposure, vigorous exercise) that can cause flare-ups.¹⁵ The most common trigger is sun exposure, making photoprotection an important component of the rosacea patient’s skin care regimen.⁶

Adherence

With a diagnosis and treatment plan in effect, the patient journey reaches the stage of treatment adherence, which should include ongoing education about the condition. Self-reported statistics from rosacea patients indicated that 28% of patients took time off from their treatment regimen,⁶ but actual nonadherence rates likely are higher. The most commonly reported reason for poor treatment adherence among rosacea patients was the impression that the symptoms had resolved or were adequately controlled.⁶ Treatment also must be affordable. In a national survey of rosacea patients, 24% of 427 patients receiving pharmacologic therapy planned on switching medications because of cost, and 17% of 769 patients discontinued medications due to co-pay/insurance issues.⁶ Other reasons cited for discontinuation of treatment included patient perception that symptoms were not that serious, co-pay/insurance issues, ineffectiveness of the medication, and side effects.⁶ Adherence to topical medications is lower than oral medications due to the time and inconvenience required for application.²² For some patients, topical medications may be too messy, have a strange odor, or stain clothing.

It is promising that most rosacea patients have reported the intent to continue using pharmacologic agents because the medication prevented worsening of their symptoms.⁶ However, there are still patients who switch or discontinue therapies without physician direction. These patients often cite that they desire more information at the time of diagnosis, particularly related to causes of flare-ups, physical symptoms to expect, drug treatment options, makeup to cover up visible symptoms, surgical or laser treatment options, psychological symptoms, patient support groups, and counseling options.⁶